Hey everyone! Sorry I haven't posted in the last few days. I had been having some calf pain and some weird scalloping discoloration to my left leg over the weekend and concerned it was a blood clot (which I am at risk for because of all the protein I'm spilling) I went to the emergency room for evlauation. I tried to go see my primary but all the docs were booked. So I went to the ED the ultrasound of the leg was negative and was discharged home with a phlebitis (inflammation of the superficial blood vessel). I was walking back to my office to get my lunch bag and my boss saw me in the hall and heard that I was short of breath. She asked me how long I have been like that. I told her for a few days when I exert myself. She was concerned because I just walked down the hall and because I didn't tell them I was short of breath nor did they ask or do a chest x-ray on me. Her concern and then my family's prompted me to return to the ED and be re-evlauted for a blood clot in the lungs.

Of course this time they did lab work too in addition to a chest x-ray and VQ scan (CT but without the contrast- they use a radioactive isotope you breath and inject into the veins that are safe for renal patients). The scans came back negative for blood clots but my cardiac enzymes were up, my sodium was low and I was having periods of sinus tachycardia (normal heart rhythm but beating fast). So they admitted me. I got one tablet of sodium chloride which may or may not have worked but my sodium came back to normal. My echocardiogram just showed mild mitral valve prolapse which I have always had. They felt it was just the lupus and the diuretics that caused my cardic enzymes to go up some. I have to follow up in a few months and have a stress test though.

My Nephrology group agreed that we should not delay treatment by trying to reschedule the treatment as an outpatient because I was scheduled to have the treatment this past Tuesday. So they kept me for another day and scheduled the Rituxan in the hospital and then I was discharged last evening after it was finished. I did well with the treatment with no reactions!

I felt really stupid going to the ER twice but I know if I didn't these things wouldn't have been found and I would not have had piece of mind. I still have the discorloration to my leg with no explanation why. I have just come to the determination.....it's the lupus. It's always the lupus! I sometimes I feel I am becoming a hypochondric with this flare and becoming concerned with every little thing. Now that I have had the treatment I'm looking to a positive direction that this treatment will work and I wll be better soon. I think if I focus on that I will calm down and stop focusing on every little detail.

mountaindreamer

07-30-2009, 06:23 PM

oh wow butterfly,

what a week you have had. I know what you mean about everything that is happening in your body and worrying you and those who care for you. I was in a really bad flare last fall, and i was in and out of the er, all kinds of specialists checking everything, and i came away with "it must be your lupus." So incredibly frustrating, but at the same time, relief that there is not something critical going on. Hopefully your flare will subside and you will be given some time to get your body back in synch....

what type of discoloration are you experiencing in your leg? I know this had to really frighten you.

take care, i am glad you are at home and can sleep in your own bed....there is nothing like our bed.

SandyR

07-30-2009, 06:49 PM

oh butterfly! Sorry to hear how unwell you have been feeling. Your symptoms sound a lot like mine. I have breathing issues too. Standing up can take my breathe without warning. Did they look to see if your lymph nodes were enlarged? I had a lot of your symptoms, fatigue, shortness of breathe, chest pain, leg pain in the calf also discoloration and swelling. The ER did a chest Xray - showed nothing. The 1st rheumy did nothing with the chest but the 2nd did another chest xray (6 weeks after the ER) and it showed enlarged lymph nodes in my lungs. Sent me to the lung guy, did a contrast CT Scan & confirmed the enlargement. I go tomorrow to schedule an appointment with the Thoracic sugeon for a lung biopsy. The PCP also ran extra bloods specific to sarcoids. Since you are a nurse, maybe you know a radiologist who can read your films for you to be sure that you don't have sarcoids too. Alot of the sarco symptoms are shared with Lupus & I don't think you are crazy or a hypochondriac to worry about a wierd new symptom. Lord knows. if we aren't proactive with our healths, no one else will be for us either!

ButterflyRN

07-31-2009, 10:44 AM

I'm glad you both don't think I'm crazy....LOL!

Mountaindreamer- the discoloration in my leg would turn a dark purple that had a weird scalloping shaping that goes up my half my thigh. I actually still have it especially after a hot shower. It appears that the discoloration is happening to my other leg now too. I'm sure it's just one of the meds now or the lupus itself. I have an appointment with my nephrologist next week so we'll see what he says.

Sandy- thanks for the thoughts on sarco. I did have a VQ scan which is a CT scan of the lungs but they use a safe radioactive isotope for renal patients since I can't have contrast. It did not show anything concerning. I have had issues with enlarged lymph nodes in my next over the past year which I had one removed last summer and well of course it's just the lupus causing a reactive node...no worries. But I will always keep that in the back of my mind.

Angel Oliver

07-31-2009, 03:12 PM

Sorry to hear you have been in hopsital but glad they have helped you.The leg colours...i have 2 legs like that n blue feet so sexy in a dress:) I tell my doc....he yawns lol. But glad you are back home.You rest and know we all care.

love Amanda.xx

crmj1183

07-31-2009, 03:41 PM

Hi Butterflyrn,

Im so glad you went to the er and got help. Rituxan, is that like Cytoxan? I had Iv cytoxan a couple of years ago, Im glad to hear that you are feeling better.

Chriss

Rastagirl

07-31-2009, 05:26 PM

Oh my goodness...what a scary time for you. Glad they admitted you and took care of things while you were there.

One of the hardest things for me to figure out throughout my years with Lupus, has been when is the right time to go to the ER. It's a really hard call, if it's not exactly serious....like breathing issues, or heart problems, or something affecting your vision, or debilitating pain, etc., I remember it being very difficult to make that decision. And then the more I used ER's and became familiar with the routine and how long they made you wait, and how long it could take while they were actually treating you, I began to NOT want to use the ER, unless it was a major emergency. My husband can testify to the fact that I would always wait until the last possible moment, before making the choice that I had to go there.

And I'll still drag my feet a bit today, because I've spent soooo much time in ER's, but I've learned over the years that there are times when you do have to do it for your own peace of mind. Because sometimes I've put it off, thinking I was being a hypochonriac and just looking at every little thing as a symptom, and then waited too long and whatever it was became so serious I had to be admitted for weeks. I began to learn that sometimes you just have to make that decision and get in there because if it is something that needs treatment, the sooner I'd get started, the quicker the overall healing process ususally was.

With Lupus, there are so many strange things that happen with our bodies, so I've learned if I'm ever in doubt about what should be treated immediately, I'll always call my doc's office and get their advice and if they say go to the ER, that's where I head. Oftentimes, they've cut down or eliminated my need for lengthy inpatient stays.

I'm glad they were able to help and you're back home now recuperating.

Stay well....

:cool2: Lori

lucky7

08-01-2009, 07:02 PM

I too have the discoloration:wacko: I get it on my ARMS and LEGS. Its not very sexy to have splochy skin to go along with the bruises all over me as well! CONNECT the DOTS anyone? :laugh: Lets just say i wear pants and capris alot more than i used to!

ButterflyRN

08-02-2009, 10:29 AM

Chriss- Rituxan is not like cytoxan. Rituxan is considered a biotherapy where Cytoxan is a chemotherapy. Rituxan does not have the harsh long term side effects that can arise down the road as Cytoxan can. But there are still side effects none the less. You have more of a chance of reacting to Rituxan because it is actually made with mouse proteins...ha ha sounds funny right. You have to be premedicated with tylenol, benadryl and this time I got IV steroids too to help prevent a reaction. Some people dispite those pre-meds still react with chills, fever, difficulty breathing, swelling of the throat, tounge. Some individuals just can't use it. I have been lucky. I had 4 doses of Rituxan along with 6 doses of Cytoxan with my last nephritis flare 3 years ago. I won't lie and say I am partial to getting cytoxan because I know it has worked. But I've also had a lot of dose of cytoxan as a young child when I had my first flare and with the second round of it to my nephrologists were not too excited to give me any more. They feel the Rituxan (which will kill off the B lymphocytes) is the safest way to go with less side effects. Also the Rituxan doesn't make your hair thin out of make you sick afterwards. That's a plus!

Today I'm feeling a little blah and weak. My swelling in my legs and feet have increased dramatically since they had me hospitalized and took me off the lasix for 3 days. It's such a hard balancing act right now because I can't have too many fluids, can't have too much salt and have to watch the protein. But then I am trying to get rid of this fluid which can deplete my sodium levels and it's just a roller coaster ride! I'm trying to stay calm and not get anxious but it's also hard to do when you are on 60mg of prednisone every day and you get short of breath climbing stairs and then your heart rate increases! I'm just ready for this flare to be over so I can get back to some normalcy((?spelling).

Angel Oliver

08-02-2009, 02:43 PM

Thinking of you and hope you get some relief soon and your legs deflate and the breathlessness eases up too.

Love Amanda.xxxx

mountaindreamer

08-02-2009, 02:54 PM

hi butterflyrn,

thanks for explaining the difference between rituxan and cytoxan....i always look forward to learning from your posts.

so sorry you are feeling blah and weak....hope the swelling has gone down.

Pearl

08-02-2009, 04:20 PM

Thinking of you. I hope you get some relief very soon.

Jana

ButterflyRN

08-02-2009, 05:41 PM

Thanks for the well wishes! I hope all of you are having a good day!

I got a little more energy as the day went on. Got myself together and went to church and then out to eat with my hubby! Had some yummy chicken pad thai at one of our favorite Thai resturants. Probably should not have had it (cause I'm sure the salt is high) but I splurged! And it tasted so darn good for once! The swelling is still there but I'm hoping in the next few days after being on the lasix it will pass. Still a little weak but I'm just accepting that as the norm right now!

lucky7

08-02-2009, 06:47 PM

AWWWW, i TOO HOPE for RELIEF for YOU and for this flare to END SOON. Im swelling in my legs alot too lately, so we can SWELL together!:yes: Heres to NOT SWELLING though is what i say! We WILL DEFLATE SOON!!!! :8:

ButterflyRN

08-04-2009, 11:34 AM

Jeannette you are so funny! I feel like my legs are going to pop! They got really bad yesterday. I'm swelling from my hips all the way down to almost my toes. Yesterday and today I have just been miserable!!! My thighs and knees hurt the worst. I'm getting ready to see the nephrologist in an hour and a half so we'll see. He called to check on my yesterday since he was out of town when I was in the hospital. He was going to increase my lasix to 80mg twice a day....I voiced concern because I don't seem to be urinating that much after I take it. Today I went a couple of times after taking 80mg but that was it! He said he would probably change me to another diuretic!

I'm getting frustrated here! I just want the lupus to leave me alone (as I know we all feel this way)! I feel like I'm getting worse instead of better. I have a feeling I'll be getting another round of Rituxan soon!

I'll keep you posted on my doc appointment later today!

Hope you all are having a better day then me :o)

Rastagirl

08-04-2009, 11:55 AM

Aww...I'm really sorry Butterfly....absolutely no fun. I hope the doctor can sort things out for you and get you heading in the right direction of feeling better soon.

Good luck with your appointment today.....keep us posted.

You are in my prayers for some relief from all of this soon. :angelic:

Gentle Hugs :hug:

Lori

mountaindreamer

08-04-2009, 01:07 PM

hi butterfly rn,

so sorry about the persistence of your swelling....that is unbearably uncomfortable.

i hope the dr. can find a better diuretic that will help with this and i hope you do not have to go back on ritoxin.

please let us know as soon as you can about your appointment.

sending you tons of angels of love.

lucky7

08-04-2009, 02:02 PM

AWWWWW, thinking of you Butterfly and i hope your appt went well!!!!! Dont worry, things will calm down for you, and if not then we can both FLOAT away together to another universe where LUPUS doesnt exist with our SWOLLEN bodies! How about that, we wont have to pay for air fare! LOL See, out of something BAd comes something GOOD! :headbang:

crmj1183

08-04-2009, 05:50 PM

Butterflyrn,

You are in my prayers I can totally relate swelling I hope you get some relief soon and get well soon, hugs

Chriss

ButterflyRN

08-06-2009, 03:11 PM

My doc appointment yesterday went well. He was upset that they took me off the lasix in the hospital because he said it just set me back and we have to play catch up. He increased the lasix to 80mg twice a day and added another diuretic(zaroxalyn) to be taken over the next few days an hour prior to the lasix. I'm going up a storm but my leg is still pretty big. As soon as I put my foot to the ground...boom it's a balloon in a few minutes! I felt a little off today I think because of the diuretic. I'm trying to be smart because they want to limit the amount of fluids I taken in along with the salt but I'm on so much I'm a little nervous! I get labs again on Monday and see him again Tuesday. So we'll see. I'm hanging in there but it's hard because the only way I know to get the swelling for sure to go away is to be off my feet for a good 24 hours except to go to the bathroom. Unfortunately that's not an option when it's just me and my husband and I have to do things. I have no family in the area and I don't have any close friends or neighbors here. So it doesn't make it easy! But I'll manage! It will just take longer to get the fluid off!

mountaindreamer

08-06-2009, 06:42 PM

hi butterfly rn,

so glad your dr. has taken such an aggressive approach to getting you straightened out. Hope his plan works, and that your poor legs get back to normal.

i too wish you could take the 24 hour rest needed for recovery.....lupus so often puts in impossible positions.

take care...hope you are resting.

Angel Oliver

08-07-2009, 05:34 AM

Just to say im thinking of you n hope you feel better soon.

love n gentle hugs
Amanda.xxxxxx

Saysusie

08-07-2009, 12:07 PM

I am late joining this thread, but I just wanted to say that I am glad that you made two trips to the ED and I am equally glad that your doctor is being aggressive now.
I hope that the problem with your leg is resolved and that you continue to get better. I know that we all wish that we could just have one 24hour period where we are not beaten down by Lupus in one way or another. I hope that you find some moments of peaceful rest!

Peace and Blessings
Namaste
Saysusie

lucky7

08-07-2009, 01:40 PM

Thinking of my Butterfly!! Wishing you well:cute:

ButterflyRN

08-07-2009, 03:40 PM

Thanks my great friends!! I'm feeling pretty good today! I went to work for the day which was quiet. I've lost almost 5 lbs of fluid so that has helped too! Hopefully over the weekend my legs will get lose a little more. My one leg I swear had at least 3 lbs of fluid on it!

Talking with all of you helps me through these issues that we all face and I thank you all for being there!

Angel Oliver

08-07-2009, 03:57 PM

I tell ya that must hurt so bad.I only have swollen knees n ankles but only a little and that really hurts.So i hope you loose it soon so you can feel a little better.

Love
Amanda.xx

ButterflyRN

08-09-2009, 11:45 AM

Well I've lost about 8 lbs of fluid! Still a some more to go but it's much better! Just need this Rituxan to kick in and get this nephritis under control!

SandyR

08-09-2009, 03:28 PM

8 lbs of fluid! :wideeyed: you must feel immensly relieved! I bet your moving around a lot easier too.

Saysusie

08-09-2009, 03:40 PM

WOW..8 pounds of fluid lost. I agree, that must be such a relief. I, too, hope that the Rituxin kicks in soon so that you can feel even more relief!

Take Care of Yourself!

Peace and Blessings
Namaste
Saysusie

ButterflyRN

08-10-2009, 05:54 PM

Well a little bit of the fluid has come back....8 lbs just happened to be for the one day. I'm averaging keeping at least 5 lbs off but that's better than nothing!

I felt well yesterday and today. I'm pretty tired from being at work so I'm going to keep this short and get to bed! I see the nephrologist again tomorrow afternoon so we'll see how things are going!

Talk to you all soon!

abbasgirl

08-10-2009, 05:56 PM

Hi Butterfly. I'm catching up and just now reading all this. I've wondered how your legs and feet were and kept you in my prayers. ((((Hugs))))

The discoloration makes me wonder if it's related in any way to perhaps something like Raynauds? Lots of lupies battle with Raynaud's in some way. It can make some scary colors.

ButterflyRN

08-10-2009, 06:01 PM

Hi Abbasgirl! Yes, I do have raynaud's but actually it's from the blood vessels and my nephrologist said it's nothing to worry about. I don't have the name of it that he gave me but I'll have to post it later!

Thanks for the prayers! That is so kind of you (hug!!)

Jewelz

08-11-2009, 09:07 PM

Hi Butterfly

Just read through this post and am wondering how you are doing? What did the doc have to say?

I didn't realize that Rituxan was given for Lupus? How has it worked for you? How often do you need an infusion? Very curious about it!

Hope you are doing better,
Jewelz

ButterflyRN

08-12-2009, 01:10 PM

Hi Jewelz,

The rituxan is actually being used for the nephritis! Rituxan depletes the B cells (CD 19 and 20 counts) to help reboot the system! The hopes is when you wipe them out it will help knock things back into remission! It is still very controversial and some insurance companies will not pay for it. I had that problem 3 years back with my last nephritis flare! Each infusion costs about $5,000.

The first time I had 4 infusions of Rituxan in addition to cytoxan. This time they didn't want to give me cytoxan because of the increase of side effects because I have had it so much even as a child when I had my first nephritis flare. This time they are following a protocol that you give a treatment monitor the lymphocytes(B cells CD 19/20) and then proceed with another treatment if the counts start to rise again. The goal is less is more for side effects with just the needed treatment. So I have been getting labs weekly and just went again today. It shows that my first treatment has worked! But I may need more. I go one more time for labs next week and then they will monitor monthly! I'm getting sick of being stuck every week!

I hope that I answered your questions. ANy others just let me know!

lucky7

08-12-2009, 01:48 PM

AWWWW, Butterfly, I LOVE YOU. SO sorry you have had it pretty rough lately.:no: Am i going to have to "bust a cap" on your problems? Cuz i WILL you know.:yes: Thinking of YOU:cute: XXXXXXXXXXXXX